In 2002 I got the earth shattering news that I could possibly have Multiple Sclerosis. In 2003 that news was confirmed. I was 29 years old. I wanted to start this blog to go over the last few years of dealing with this illness and look forward to the future as it happens. If I can give hope to just one person, that life isn't over when you get life changing news, then this will have been worthwhile!

MY BIRTHDAY!

Wednesday, 1 April 2009

I've been neglecting you.................

............... and I apologise for that!

I had my oral steroids last week, which finished on Thursday. They had quite an affect on me but not a positive one! They left a very bad taste in my mouth, which meant eating and drinking became a chore. In fact my appetite decreased quite a bit. Not a bad thing really!! But it did mean that I felt pretty weak. They generally left me feeling pretty rough and under the weather. I am not convinced that they had a positive impact on my symptoms either, which is frustrating to go through all that and not get the benefit as well. The only positive was that my hearing in my right side did improve. So something positive did come from it!

Then I had my busy weekend!

We had our last two performances of Show Boat. They went very well, considering I wasn't feeling very good. Thursday's performance for me wasn't a good one. I didn't feel as though the quality was there and I felt that the steroids had effected my voice. But then the feed back I have had has all been positive. Martin even felt it was possibly the best I had sung it - go figure??!! Friday's performance, for me, was a little better and I think we all just enjoyed it, knowing it was the last time we were to perform it with the orchestra and an audience.

By Saturday I was shattered. It had taken every bit of energy to do those performances and then some.

I had my hair cut on Saturday, which is always a nice treat. It was interesting though because it made me realise that the numbness in my head and ear, on the right side was still there. I was a little disappointed. But happy with the hair cut! Nice and short, not difficult to manage!

I spent the afternoon resting, ready for our rehearsal in the evening for our Debut How Apt gig. The rehearsal went well. It was a chance to iron out any problems and just run the whole performance, something we had yet to do properly! Although we were all pretty tired by the time we finished, it was with an air of satisfaction that we could pull this off. And dare I say we were actually looking forward to doing it!

Sunday came and Martin had a rehearsal in the afternoon for his production of Hello Dolly. I stayed at home and just rested. I felt a little out of it. And I had an air of concern about me. But I didn't feel that it was about the performance. I realised that I was worrying about the IV steroid infusions that were starting on Monday. I had to push that to the back of my mind, after all I couldn't do anything about that and I wanted to enjoy our first gig!

It went really well and although the audience was made up of friends and family, we had such a positive reaction. It felt so good to be a part of it and to be singing again. It made me realise just how much I had been missing it. I had been in denial about that and I had lost all my confidence. I had even convinced myself that it didn't matter and I could live without it. Big mistake! I can't. I love the freedom it gives me to express myself. I love being part of a group who are all there for each other. Making a great sound and doing it professionally. May this continue for a long time!!

Obviously by the end of the evening we were all buzzing but I was also absolutely shattered. And then it hit me. There was nothing now in between me and the IV steroids!

I went to bed and got a little sleep. But I was nervous. I was nervous about the cannulation more than having the drug itself. I have had so many problems in the past with them finding my veins that I am ready for it to be a traumatic experience. Unfortunately Martin couldn't come with me as he has had to work all this week, so I arranged for a friend to be there instead. I didn't want to face this alone. And I am so grateful to Jeane for being there for me. I really needed that support. And we were able to chinwag, which made the time fly!

6 attempts it took for them to get the cannula in. They even got a doctor to try, but that didn't work. I was asked if I wanted to go home and try again the next day, but I decided that I was there and they may as well persevere for a little longer. It paid off because the last place they were going to try, it went in and stayed. It is in an awkward place on the edge of my right hand. But we have bandaged it up as best as we could and I have had to make sure that I don't do anything with it - no washing up, making the tea etc!!

So after arriving there at 9.45 am on Monday morning, we left at 2pm having had the first infusion. It knocked me out. I dropped Jeane home and came home myself. I just crashed on the sofa. I was suffering badly with the hot flushes. Sweat pouring off me. But the bad taste in my mouth wasn't as powerful as with the oral ones, so I am eating a lot better this week. I managed to get some sleep too, which was a bonus.

My concern on Tuesday was whether the cannula had held or whether the vein had collapsed and we would have to go through it all again. Jeane came with me again, thankfully. The nurse got the flush ready and I held my breath! It went through OK! I could breathe again! We put the infusion through slowly so as to preserve the vein for as long as possible. So we still didn't get out of there until 1pm yesterday.

I got home and crashed again. But only after I had had some lunch. It has been a welcome relief to be able to eat this time. I think that because with the oral ones the taste was so bad, I was concerned that these would be the same. I have always had that problem with the steroids. But flipping that around, I think because the oral ones were so bad, this seems very tame!

Anyway by last night my hand was becoming very sore and I was becoming very emotional. I just want it all to be over now. I know I only have one infusion left but it has left me knocked out and feeling pretty low.

Someone asked me yesterday whether I was feeling any benefit. I have to say at this point I don't really know. I think the numbness is not so prominent. But I will reserve judgement on that until I have had the full course and see where we stand then.

I am not due back at work until next Monday so I am looking forward to a few days of not having to do anything. Just recuperating. And I plan to do that this time. Quite often I rush straight back to work or I try and do something else with the time, which I know is not sensible. I want to come out of this knowing that I did all I could to feel better and that means giving in and resting!

As you can see I am writing this at about 4am, so sleep has eluded me tonight. I managed a couple of hours but rather than lie up there frustrated I decided to let Martin get a good night without me tossing and turning!

My hand is sore, but I am praying it will hold out for this last infusion. I'll let you know!

i hate bloody cannulas.i always catch them on the bedclothes.lol.hope it helps amelia,really do.just,don't get too upset if there isnt a lot of difference,ok?i really hate this ****ing disease.i am in relapse,had 4 crap nights,woken nearly screaming with pain in my arm,eyes got that flicker you get,other things i aint saying,lol.but,we keep going hun.we have to,i am so glad you have your singing.maybe i should give it a go?or not.as i am tone deaf.lol.take care,love mort xx

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About Me

I am 43 years old and I have been happily married to Martin since 1998! We have 2 cats who are our beautiful babies! Oh yes and I have Multiple Sclerosis. I was diagnosed in 2002. I stopped working in 2004 but got a part time job at Asda from 2006 - 2009.
One of my main passions was being involved in theatre, especially singing and I have continued that by organising 3 charity concerts with Martin. We have raised over £6000 so far. I also make my own cards, when the MS lets me!
Welcome to my world......nice to meet you and feel free to join in! :-) XxXxX